III 

109TH CONGRESS 

1ST SESSION S. RES. 180 

Supporting the goals and ideals of a National Epidermolysis Bullosa Awareness Week to raise public awareness and understanding of the disease 

and to foster understanding of the impact of the disease on patients 

and their families. 

IN THE SENATE OF THE UNITED STATES 

JUNE 23, 2005 

Mr. SCHUMER (for himself and Mrs. CLINTON) submitted the following resolution; which was referred to the Committee on Health, Education, Labor, 

and Pensions 

RESOLUTION

Supporting the goals and ideals of a National Epidermolysis 

Bullosa Awareness Week to raise public awareness and 

understanding of the disease and to foster understanding 

of the impact of the disease on patients and their families.

Whereas epidermolysis bullosa is a rare disease characterized 

by the presence of extremely fragile skin that results in 

the development of recurrent, painful blisters, open sores, 

and in some forms of the disease, in disfiguring scars, 

disabling musculoskeletal deformities, and internal blistering; 

Whereas approximately 12,500 individuals in the United 

States are affected by the disease; 
2

•SRES 180 IS

Whereas data from the National Epidermolysis Bullosa Registry indicates that of every 1,000,000 live births, 20 infants are born with the disease; 

Whereas there currently is no cure for the disease; 

Whereas children with the disease require almost around-theclock care; 

Whereas approximately 90 percent of individuals with 

epidermolysis bullosa report experiencing pain on an average day; 

Whereas the skin is so fragile for individuals with the disease 

that even minor rubbing and day-to-day activity may 

cause blistering, including from activities such as writing, 

eating, walking, and from the seams on their clothes; 

Whereas most individuals with the disease have inherited the 

disease through genes they receive from one or both parents; 

Whereas epidermolysis bullosa is so rare that many health 

care practitioners have never heard of it or seen a patient 

with it; 

Whereas individuals with epidermolysis bullosa often feel isolated because of the lack of knowledge in the Nation 

about the disease and the impact that it has on the body; 

Whereas more funds should be dedicated toward research to 

develop treatments and eventually a cure for the disease; 

and 

Whereas the last week of October would be an appropriate 

time to recognize National Epidermolysis Bullosa Week 

in order to raise public awareness about the prevalence 

of epidermolysis bullosa, the impact it has on families, 
3

•SRES 180 IS

and the need for additional research into a cure for the 

disease: Now, therefore, be it

1 Resolved, That the Senate— 

2 (1) supports the goals and ideals of a National 

3 Epidermolysis Bullosa Awareness Week to raise pub4 lic awareness and understanding of epidermolysis 

5 bullosa; 

6 (2) recognizes the need for a cure for the dis7 ease; and 

8 (3) encourages the people of the United States 

9 and interested groups to support the week through 

10 appropriate ceremonies and activities to promote 

11 public awareness of epidermolysis bullosa and to fos12 ter understanding of the impact of the disease on 

13 patients and their families.

Æ